Closed Collective Model: Week Six – Exploring possibilities

A note at the start about language: I am a disabled person and I sit on the board of a disability charity. In both my day-to-day life and that role, I do not use what is known as ‘person-first language’ (e.g. a person with disabilities) but instead use the term ‘disabled person’. It comes from disability rights activism and what is known as the ‘social model of disability’. It is not used here to be prescriptive as there are many ways disabled people choose to refer to themselves, but it is the language that I use.

Despite most of us being unwell with various illnesses, we were once again coming together with a lot of excitement about working together and seeing each other.

Following on from the last two meetings, which looked outwards, this meeting saw the group look within the borough to learn more about what might be involved in developing and setting up new activities and opportunities in the borough.

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We need to be able to acknowledge what the problems are in order to change them

As previously mentioned in these blogs, the group has discussed that one area in which the youth sector in the borough could improve is in the provision of services for disabled young people. This led to them deciding to invite Elaine from DABD to join a meeting, to better understand provision in the borough and how the resources they have could be best allocated to address some of the needs they’d identified.

Gaining understanding

We were very fortunate to have Elaine join us, especially as she beamed into our meeting while on holiday. She was very forthright with the group about the growing need in the borough, both in terms of demand and complexities, so was very keen to welcome any steps that the group might start to take around exploring this. Many young disabled people require 2:1 support to access activities, and the pandemic has meant resources being focussed on families with the highest need – this has led to a gap in provision for those young people whose support needs prevent them from accessing ‘mainstream’ activities but which aren’t great enough to be prioritised.

What compounds much of this is another issue the group has already highlighted, which is the language barriers that exists in the borough – many families don’t have the language they need to explain their problems or if they do, don’t know where to go for support.

For the group, who have mixed levels of experience with working with disabled young people, they want to become more knowledgeable about what types of support they might be able to provide, and in doing so ease the pressure – there was some understandable apprehension about not wanting to do the wrong thing but this was balanced out by the recognition that they might also be doing the wrong thing by doing nothing.

Sarah from asked what resources DABD had which they might be able to make use of, including what training they could offer and if they still had access to vehicles. Elaine outlined the availability of the vehicles but didn’t have numbers to hand for running costs. In terms of training, there are a number of options available (including minibus training) and many of them can be delivered flexibly as online or half-day offers.

She also identified their Saturday club, which has a rotating schedule of activity and offers two weekends a month to families as a potential area for collaboration as the nature of the programme leant itself to bringing in new groups to work with young people.

Georgina brought in a key point by highlighting that some organisations might be best used to provide wraparound support to parents and carers and to also involve them in activities – this would therefore need to be separate from activities which sought to provide families with much-needed respite. It’s in teasing out these details that conversations like this one really demonstrate their utility!

Overall, the group articulated a vision where disability awareness and resourcing was embedded across the Children & Young People’s Network and not just seen as one organisation’s remit or responsibility – they share a vision of a more inclusive borough and they know that this cannot just be about platitudes as ensuring all young people have the opportunity to thrive requires significant investment and determination to carry out the necessary changes.

One of the barriers the group identified in all of this was the gap in social prescribing and how that was being implemented by the local authority, namely in that it was not as ambitious at it needed to be – they agreed it would need a large community response to change this approach which underlined the need for taking these initial steps together.

It was a privilege to facilitate this conversation, with Elaine and the group members really being vulnerable about their needs and their ability. It wasn’t about being negative about where there were gaps but a genuine step into trying to understand how they might be able to address the needs that they see in their community.

After understanding, action?

While many of the needs in the borough are well beyond the scope of this pilot, they are still important and deserve to be acknowledged and discussed here – as Jeorgina put it, visibility is really important as the more the sector shares its experience about this, the harder it becomes to pretend these young people do not exist.

Once Elaine had gone, the group discussed where they wanted to take things next, ultimately deciding on a few other organisations to approach about potentially taking this forward – they actually surprised me by asking BD Giving to make these approaches, citing our existing relationship with the organisations in question.

While we always want to share power, I think BD Giving as an organisation is still struggling to understand when and how to use the power we do have. We therefore run the risk of staying silent when it would have been beneficial for us to intervene in a particular moment, simply because we were worried about depriving someone else of the opportunity to speak up. There’s a big difference between assuming a paternalistic role and never allowing others the opportunity to try something themselves, and them deciding that they would like you to represent their interests.

It’s been great to have the group challenge our thinking and assumptions around this, ensuring the pilot is a two-way learning process and not simply BD Giving deciding on a particular way forward.

Many ways forward

Some really interesting ideas were brought up in this conversation, which bear putting down somewhere for reflection:

  • A safe space for organisations to be honest about how much capacity they have to support young disabled people, and to learn about what they could do with the resources they currently have.
  • Joint funding bids to specifically pilot intensive support that would allow young people with high support needs to attend the regular activities of BDCYPN.
  • A Language Forum where people could access disability information that they could understand, and to also learn the language they need to discuss the needs of their child.
  • DABD or other disability-focussed organisation to provide transparent information to BDCYPN about the costs of supporting young disabled people so that other organisations could factor this into bids.

Next time

As we’ve taken a lot in over the last three meetings (and come to the end of the second phase of the pilot), we’ll be using the next meeting to take stock of the journey so far and what the next steps look like. 

With half-term next week, we agreed to meet the week after and, due to the group feeling that they needed more time between meetings to fulfil actions and do some thinking about what we discuss, the next batch of meetings will be held fortnightly instead. We’re also moving from a Monday to a Tuesday due to various commitment conflicts in November. In the meantime, the group will be meeting with me individually to capture some thoughts and feelings about the pilot so far that we don’t have the scope to get into in the group meetings.

As this would make the last meeting very close to Christmas, we’ve also agreed to move that one into the New Year and we’re also hoping to have it in person (fingers crossed!).